February 10, 2019
Dear Dr. Benson*,
You came to mind earlier today and I figured its long
overdue that we talked. I know we saw
each other in passing a few times during my appointments with Dr. Fields* that
first year after my son was born, but we’ve never had the opportunity for
dialogue beyond exchanging pleasantries in the hallway of your practice. I suppose I am mostly to blame for that after
moving on to my obstetric surgeon’s practice.
Leaving wasn’t personal, but it also kind of was. I felt my surgeon would be the best person to
answer all my questions since she and her team were the ones who patched me
back together when all hell broke loose.
And seeing you in the hallways saying hello like nothing had happened,
well, it was getting harder for me, but I digress.
My son had a 104 degree fever two days ago that prompted a
visit to his doctor on Friday. She
determined he had an ear infection and prescribed amoxicillian. All seemed to be well until he developed a
rash on his upper arms last night. Of
course, I was on high alert considering he has anaphalactic allergies to a few
things already, but the rash wasn’t anywhere else on his body and it
disappeared shortly after his bath. When
the rash appeared on his face this morning, I knew it was time to call her. Eerily, my off-hours call on a Sunday morning
went to his doctor’s colleague, who is on call this weekend.
And I thought of
you.
The similarities sent a shiver down my spine.
Thankfully, the on-call doctor returned my call immediately. She advised that we stop the amoxicillian because he may be having a reaction to it, and that I give him benedryl. Knowing his history,
she told me not to panic and that I should call her immediately if anything
changed. If he developed a fever or the
rash did not go down in a reasonable amount of time, I shouldn’t hesitate to
call her again. In addition, she instructed
us to come into the office to see her the following morning.
Then something amazing happened:
she called me again an hour later. She wanted to know how he
was doing and asked me to send photos of the rash to her cell phone. I was blown away! I was so touched by how attentive she was,
and then I realized why and my heart sank.
This is what a normal off-hours response to a patient’s concerns looks
like. This is the type of follow up I needed
when I called six days postpartum complaining about persistent abdominal
pain.
Our experience with my son’s doctor is a stunning contrast
to the one I had three years ago, and I know that is hard to read. Maybe you think about it a lot too. I hope you do. I hope it has prompted you to change the way
you respond to off-hour calls from patients.
It’s my greatest hope that my case has made a difference at your
practice, but we’ve never had that conversation so I have no way of knowing. I often think about my calls to you
during those 24 hours and all the time that was lost. I can still hear
your voice so clearly over the line. I’ll
never know the answer, but I used to speculate about what you were doing during
that time. Were you knee deep in
deliveries that weekend and the severity of my medical history wasn’t at the
forefront of your mind?
Or were you like me and falsely believed that once delivery was over,
all of the troubles I faced were over too?
But the fact remains, I was a high-risk postpartum patient on blood
thinners with a c-section and prenatal pulmonary embolism near-miss under my
belt. If there was ever a patient to err
on the side of caution with, I was her. If denial and delay affected me, what is the
response to women without such a complicated history? That thought stops me in my tracks. Are there others?
I was a first time mother with no experience in the
postpartum period and the c-section was my very first surgery. I had no idea what to expect as far as pain
or recovery time. Something instinctual
told me that what I was feeling wasn’t right though, which is why I called you. I’ve since learned I should have trusted
myself and my body more than I did at the time because the red flags were there. Forget the phone calls, when I was in so much pain that I couldn’t physically care for my baby anymore, I should have gone
straight to the ER. I didn’t want to
believe I was facing yet another serious medical issue so soon after my pulmonary
embolism episode. I was in denial too.
The consequences from our
denial and delay will stay with me for the rest of my life. I remember kissing my son goodbye for what I
thought would be the last time. I missed
the entire second week of his life. The
crushing feeling from all this isn’t something you just get over either. Yes, I walked away alive, but not unscathed. There will always be an
alternate reality to our lives, one in which the “what if…” means my husband is a widower and my son is motherless. The
gratitude I feel is something fierce but so are the questions that linger. What if I went to the emergency room after
that first call? Would it have affected
my outcome? Would it have been less
severe? Would we have been able to go on
to have more children? Would I have
emerged from all of this less traumatized?
When I gave my son the benedryl for the hives, tears started
rolling down my cheeks. After all we’ve
been through, I am still waiting for the next shoe to drop even three years
later. My pulse spiked because I can’t
shake the thought that after all my little family has survived, we could lose
him in an instant. The hypervigilance I
feel about my own health absolutely transfers over to him too… I don’t feel
like I can ever fully let my guard down.
I’ve learned to live with that constant fight-flight or freeze. It hovers somewhere in the background most
days, but it’s most definitely still there.
It has become our new normal. At
times it makes me feel like a battle-tested warrior and there are other times
that it just makes me so incredibly sad. Our journey to parenthood and the
after has been exponentially harder than I ever thought it should be, but I’m determined to give it purpose by helping
future families navigate around the rocks we hit.
I do miss Dr. Fields* and the staff, especially Dana*. I felt so much support from them during my
battle with infertility, my miracle pregnancy and then after the pulmonary
embolism episode. Dr. Fields* helped me
get through a lot of it and I will never forget her glee the day I walked into the office pregnant. Maybe someday we
can join forces against this beast called maternal mortality and
morbidity. We can work together to implement
protocols for healthcare providers in line with the STOP-LOOK-LISTEN
campaign. We can educate patients and
prepare them to recognize an emergency quickly.
We can hold a Heroes For Moms blood drive. I fear the recoil which is why I haven’t
reached out yet, but I would love nothing more than this. I really hope we can make this a reality someday, so more moms like me can walk away.
Until then,
Casey
* names changed to protect privacy.
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